Re: Welcome to all the newbies I don't know yet

[Guest guest]

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> From: hkdawn hkdawn@...

> Subject: Welcome to all the newbies I don't know yet

> To: Breathe-Support

> Date: Thursday, July 2, 2009, 7:59 PM

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> A quick welcome to all the newbies I haven't gotten to meet yet. My

name is . I am 36 years old and was diagnosed with PF at 33.

Thankfully I've been pretty stable every since. I have Hermansky-Pudlak

Syndrome which is a rare type of albinism that causes PF, as well as a

bleeding disorder, legal blindness in most, and for some of us (like me)

Crohn's-like digestive problems.

> Hello and welcome!

> Kirkwood

> Director of Outreach, Vice President

> Hermansky-Pudlak Syndrome Network

> One South Road

> Oyster Bay, NY 11771

> 1 (800) 789-9HPS

> www.hermansky- pudlak.org

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> Personal blog: www.heatherkirkwood .blogspot. com

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> Search the Web at www.goodsearch. com and choose the HPS Network as

your charity!

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